KQED profiles those who live with disease, injury
This month’s edition of Health Dialogues, part of KQED’s California Report, focuses on living with disease. In the report, KQED reporters talk to folks living with chronic disease, the effects of traumatic injury and other conditions that can have lasting effects on a person’s quality of life.
To provide insight into the life and routine of someone coping with chronic disease, reporters profile a music programmer ‘coping’ with diabetes, an activist who stumbled upon a forgotten childhood diagnosis of hepatitis B and a cellist with multiple sclerosis. They also talk to a couple dealing with cancer and two sisters on opposite ends of an organ donation chain.
In addition to cancer and disease, KQED reporters also explore how the lasting effects of traumatic injury can shape your life. Pieces include a KPBS reporter talking about his own traumatic brain injury and the story of a surfing-based physical therapy program for veterans.
Journal launches site for journalists covering studies
In an editorial in the Journal of the National Cancer Institute, “Promoting Healthy Skepticism in the News: Helping Journalists Get It Right,” Steven Woloshin, Lisa M. Schwartz and Barnett S. Kramer analyze some recent media coverage of journal articles and research findings and conclude that “When it comes to exaggeration of health hazards and medical breakthroughs, there is plenty of blame to go around.”
It would be easy to pin all the blame for exaggeration on journalists. After all, they have to grab their reader’s (or listener’s) attention. Screaming headlines and breathless reporting come in handy. And many health journalists lack the medical or statistical training needed to appraise research critically. Curiously, many fail to approach medical research with the same skepticism they routinely apply to political reporting. Nonetheless, blaming journalists for all exaggeration would be unfair. Many health journalists (and their editors) do a great job.
The writers also acknowledge that researchers’ passion can play a part, as well as the desire to get good media attention. They also point to journals’ failure to include or highlight some important elements that would help journalists accurately report on study findings.
In a move to help improve coverage of research, the JNCI has launched “a Web site for science and health journalists to help them ‘get it right.’” The first offering is “Reporting on Cancer Research,” a set of tip sheets designed to help reporters better understand oncology research and its results. It was developed for the writers’ book, Know Your Chances: Understanding Health Statistics, and adapted for journalists attending the annual Medicine in the Media workshop. Each PDF highlights a different aspect of interpreting cancer research (risk numbers, statistics, findings and outcomes, and cautions), and all four are succinct and easy to use, even on deadline.
Can Americans learn that less may be better?
AHCJ member Laura Newman, the About.com guide to urology, writes about whether consumers will embrace the message that “‘less is more,’ when science confirms it.” In this case, Newman focuses on the American Urological Association’s guideline for kidney cancer treatment, released in April, that called for saving the kidney whenever possible.
Taken in the context of the conflicts in the past few weeks over recommendations for less PSA screening, less breast cancer screening, and less cervical cancer screening, I commend the AUA and other physician organizations for reviewing the balance of benefits and harms in treating early-stage kidney cancer more aggressively.
Is community research oversight flawed?
Filed under: Government, Hospitals, Hot Health Headline
America’s 400-plus designated Community Research Sites receive much less attention than the massive academic research hospitals, but conduct the bulk of the nation’s cancer research.
The New York Times’ Duff Wilson turns the spotlight on these sites, considering problems an HHS investigation uncovered at an institution in Urbana, Ill., that may show that oversight is lacking and “the community centers may not always be adhering to the rigorous protocols of research medicine that the National Cancer Institute expects them to follow.”
If that’s true, Wilson writes, it will draw the very validity of many research conclusions into question. If you’re curious about the specific nature of the research site’s violations rather than the larger systemic implications, check out the second page of Wilson’s story.
Hockey, theater tickets for prostate screenings
Gary Schwitzer, professor at the University of Minnesota School of Journalism & Mass Communication and publisher of HealthNewsReview.org, writes about the Roswell Park Cancer Institute’s promotion of its “Prostate Club for Men,” complete with prizes for men who discuss screening.
As Schwitzer points out, there is no mention of the potential harms of prostate cancer treatment or the fact that some prostate cancers grow so slowly that they never produce symptoms or become life threatening. Instead, the club says the screening is “quick and simple, and it could save your life.”
The club’s Web site even carries a message from a local anchorman urging men to be screened for prostate cancer, again, with nothing about potential harms.
Cancer data fly and reporters struggle to keep up
For health journalists, the annual meeting of the American Association of Clinical Oncology poses a double-barreled challenge: How to cope with the sheer number of presentations and how to figure out which experimental cancer treatments might be the real deal?
The stories are already flying out of Orlando, Fla., where the meeting got rolling over the weekend. One hot topic is a new approach to treating tough breast cancers. Several experimental drugs that inhibit the ability of cancer cells to repair themselves show promise. Baylor’s Powel Brown told Bloomberg the drugs, known as PARP inhibitors, “are the biggest story in breast cancer, by far.” (See ASCO’s press release here.)
Even though the PARP results look good in preliminary clinical tests, cancer specialists cautioned that larger studies are needed and that nobody expects the drugs to cure patients with advanced disease, The Wall Street Journal reports.
Even if PARP inhibitors being developed by Sanofi-Aventis, Abbott Labs and Merck pan out, they won’t be on the market for years. And if they make it, how much will they cost? Too soon to say.
But a story in Forbes serves as a reminder that even incremental advances in cancer care have come at a high cost. “We would like to believe that cost should be no object, but that is not reality,” Leonard Saltz, a colon-cancer expert at Memorial Sloan-Kettering Cancer Center, told Forbes.
Matthew Herper, who’s covering ASCO for Forbes, gives some reporting tips in an e-mail to Covering Health. “It’s important to talk to as many doctors as possible, and to be able to ask a few you know well and trust for their opinion,” he writes. “I also think pitches from PR firms and companies are useful for helping identify things that might be interesting, but that it’s important to approach each scientific presentation with an open mind about whether the result is positive or negative.”
Fawcett speaks out on cancer, media and privacy
ProPublica senior reporter Charles Ornstein, who is vice president of AHCJ’s board of directors, interviewed Farrah Fawcett about her fight against cancer and her accompanying struggles with media and privacy last August. A story based on the interview was released Monday in ProPublica and the Los Angeles Times. A producer who worked with Fawcett on a related upcoming NBC documentary had asked that the story be held until five days before the documentary’s Friday release.
Above all, in a firm voice that betrayed no hint of her terminal illness, Fawcett described how she was deprived of the choice that most other cancer patients have: when, and even whether, to share information with family, friends or strangers.
“It’s much easier to go through something and deal with it without being under a microscope,” she said. “It was stressful. I was terrified of getting the chemo. It’s not pleasant. And the radiation is not pleasant.”
In the interview, Fawcett talked about the private sting operation she ran to help track down the UCLA Medical Center employee who was leaking details about her medical care to a tabloid and her frustration with the hospital’s aggressive efforts to encourage her to donate money for a hospital foundation in her name.
Fawcett said she decided to speak up about the ordeal because she wants to see the Enquirer charged criminally for inducing UCLA workers to invade her records. “They obviously know it’s like buying stolen goods,” she said. “They’ve committed a crime. They’ve paid her money.”
Fawcett describes the sting to Ornstein in the video below. Ornstein will appear Tuesday on CNN’s Showbiz Tonight at 11 p.m. ET to discuss the story.
Experts: Benefits of cancer screenings overinflated
In Reader’s Digest, Shannon Brownlee reports that while the American Cancer Society and federal government still push regular cancer screenings, “a growing group of scientific heretics - published in highly respected medical journals, working at some of the most august institutions - strongly believe that it’s time to rethink our whole approach.”
(Some researchers) say that yearly mammograms are not nearly as effective at reducing the risk of dying of breast cancer as most women think, and that mammography leads many women to get unnecessary treatment - especially those diagnosed with DCIS [ductal carcinoma in situ]. The problem is bigger than just mammography: They say the prostate-specific antigen (PSA) test may do men more harm than good if they don’t already have symptoms of prostate cancer. And they have similarly grim things to say about other widely used cancer screening tests.
Experts that Brownlee interviewed say that screening catches tumors that would never cause major problems but not so effective at catching the more deadly, fast-growing kinds of cancer. Only a small percentage of all cancers that occur are fatal, and some cancers disappear on their own, Brownlee reports.
Brownlee also answers reader questions directly and has talked to AHCJ about her book, Overtreated.
Story documents end of life for woman and family
In “The Final Journey” in Cure magazine, contributing photographer Beatriz Terrazas and Cure editor-at-large Kathy LaTour document the final six months of 64-year-old Judy Abernathy’s life.
Abernathy invited CURE to join her family as they began moving toward the end of her life from metastatic lung cancer.
They follow Abernathy’s visits to a palliative care physician, report on her decision to stop a clinical trial so she could continue to be part of her family, describe the effect her illness has had on the family and document the steps she takes in hospice care.
“I have tried to stay on top of everything because when you go to sleep you don’t know if you are going to wake up,” Judy says lightly. It’s clear she is trying to begin the final discussions she wants to have with her children.
The Web site includes a eulogy written by Abernathy’s granddaughter - a journalism student - and features about hospice and palliative care and an article about controlling pain in cancer patients.
Faculty concerned about San Diego ‘cancer cluster’
In the last 16 years, three people on the San Diego State University campus succumbed to a rare form of brain cancer. They all worked in the same room. Randy Dotinga investigated what some are calling a “cancer cluster” for voiceofsandiego.org. Dotinga also answered frequently asked questions about the situation and cancer clusters in general.
School officials aren’t investigating the cluster, Dotinga said. According to Dotinga’s story, “those who study cancer clusters say there’s a good chance that nothing is wrong. Suspicious statistics, they say, are sometimes just a random fluke.”
The room, NH 131 in Nasatir hall, is currently used by graduate students as a meeting and study area.
With the exception of workplaces like factories and mines, “our batting average as epidemiologists in explaining cancer clusters. … has been very poor,” said Dr. Raymond Neutra, former chief of the state Division of Environmental & Occupational Disease Control.
Still, faculty members want more action. “I’m certainly not panicked about it, but we think questions should be asked,” said Brian Adams, an associate professor of political science. “With that high of a number (of cancer cases), dismissing it as being a likely coincidence probably isn’t the wisest path.”
The two professors in question, aged 69 and 49, and the graduate student, 26, all spent time in the room and developed cases of glioblastoma multiforme brain cancer, The Daily Aztec student newspaper reported Monday. Another professor who worked in the room is said to be suffering from another kind of brain cancer.
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Health Journalism 2010, AHCJ's annual conference, features a world-class program with story ideas, sources, stronger reporting skills, chances to meet newsmakers and network with other journalists.
- Health and education: Covering these intersecting beats
- Reporting on the business of health care
- Health reporting resources for journalists on state and local government beats
- Shortened Lives: How location, lifestyle affect health
- Covering a complex story for the long haul
- Aging in the 21st Century: Presentations and tip sheets
- AHCJ calls for better information from Joint Commission Web site
